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June 24

Our beloved Carol died today, June 24th, 2005, from ALS. She passed away quietly in the early evening, surrounded by her sister Anne, her best friend Katey Strollo, her husband Paul, and her parents, Jan and Ted. Her fight with ALS lasted less than a year, but the grace, humor, and strength with which she fought will be forever remembered.

There will be a memorial service for Carol at First Congregational Church in Ithaca, NY at 2:00 on Sunday, July 3rd. Carol's husband requests that those attending wear bright colors to honor Carol's memory, and help us all to celebrate her life. Please also consider a gift in Carol's memory to The ALS Association (alsa.org) or Carol's Team.

Thank you all so much for your love and support of Carol and our family.

Kate Buckley

June 23

Carol continues in a more or less unconscious state. She is being routinely cleaned to avoid bedsores, which have so far been mercifully absent. She is being watched round the clock by Annie, Paul, Mom, and Dad. Several other friends are helping for prolonged periods.

She has had two more near-death episodes, but recovered dramatically after each. It's not really clear what she's going through. The hospice nurse feels that this progression is not unusual and doesn't believe that Carol is in any great discomfort. She seems peaceful. She is receiving low-level morphine to help reduce anxiety.

June 20

Carol had a rough morning and it looked like she might go. She recovered and appears to be comfortable although there is now no way at all to communicate with her.

June 16

Olivia and I went to Ithaca on June 13th to visit Carol and the rest of the Buckley family. Despite the sadness of knowing this was probably the last time I would see Carol, we had a really wonderful four days.

Carol looks beautiful. Her skin is flawless, her hair long and soft, and her eyes still sparkle. Her feet have been massaged so regularly that they feel like Olivia's. What is noticeably different from the last time I saw her, which was her birthday party in March, is that she can no longer sit up by herself, and she has no strength left in her neck. She lays back in her recliner with pillows to help support her head, and she needs someone to periodically adjust her neck. She is using oxygen full time now. A new medication has helped her excess saliva problem quite well, and now she only needs suction every fifteen minutes or so.

Carol can still smile. On Wednesday, Katey Strollo, Carol's sister Anne, Pat the Hospicare nurse (who is a phenomenal nurse and companion to Carol, and to whom we are so grateful for her exceptional care) and myself were visiting Carol. Anne rubbed her feet, Katey and Pat rubbed each of her hands and arms, and I gave her a scalp massage. During all of this rubbing, we told funny stories, and all of us laughed quite a bit. Carol laughed along with us, and was very much a part of the conversations, and contributed using her Plexiglas letter board.

Carol tires easily these days though, and has been sleeping much more often than she used to. We have been informed that this is usually a sign that she won't be with us much longer. Predictions from the Hospicare staff have ranged from days to a few weeks. I said goodbye to Carol, which was incredibly difficult. I am grateful, however, that I had that chance to tell her how much I love her, and how honored I am to have known her. Carol truly welcomed me into the family when I first married Eric, and has been both a friend and a sister. I made a vow to her that Olivia would grow up knowing her through her pictures and music, and the legacy of kindness and strength she will leave behind.

Kate

May 24

Hello!

Carol is a real Diva now. She had her first set of Botox injections yesterday. Now she has the prettiest salivary glands on the east coast. ;)

Seriously, the visit to the Syracuse hospital went very well. We were in and out in probably 30 minutes. Carol never even flinched when they gave her the injections.

Dr Sheffner says we should be able to see results in a couple days or less. Like all procedures there are no guarantees, but were hoping for the best.

The last couple weeks things seem to be going much better. Carol is using the communication device more, and her speed is improving, Paul seems more rested, and everyone seems to have a better sense of what their "role" is so there are fewer last minute crises to deal with.

Not much else going on - Al and I are looking forward to spending a day this weekend searching out yard sales and chicken bbq - our standard anniversary celebration. It's amazing how much fun you can still in a day have with a tank of gas and a handful of quarters.

Cheers! Anne :)

May 1

Carol is still remarkably upbeat. Her voluntary movements are pretty much limited facial expressions and slight movements of her forearms and thumbs. This is enough to communicate, albeit very slowly, via an alphabet board.

On the board, letters are grouped into sets of 4. She looks at the set she wants and the translator points to where they think she is looking. She gives a slight nod or thumb movement to acknowledge. Then she looks at the corner of the board to indicate which of the four letters in the set to choose. It's tedious, but it does work.

Her biggest problem is the constant drooling that comes from loosing her ability to swallow. She told me her new slogan is "Love me, love my drool." She took some medication that was supposed to help with that, but it didn't seem to do much and had some nasty side effects. Another option is botox injections, which would work, but she wouldn't be able to smile. Carol is reluctant to give that up since it's about the only thing she can still do.

April 19

Hi all - just a quick update on little sister. Yesterday the folks from Hospicare stopped by and spoke with Carol about a few days stay at the Hospice center. As you can imagine Carol was NOT keen on this idea - in fact she still sleeps in a recliner because the adjustable bed reminds her too much of what is to come. However, a few days ago I hurt my back (moving crap at my place, not lifting Carol), but every day I continue to assist her in and out of the wheelchair, my back gets worse instead of better. Between my begging her for a few days rest so I can heal and the folks from hospice assuring Carol that all her friends could visit her there she finally agreed.

Today Paul and I will take her up and will stay with her until other friends of hers arrive later this afternoon. This evening a small chorale group will be coming to sing for her, and I'm sure they will entertain the others at Hospice too. Carol plans to stay at Hospice until Sunday. Paul will stay there with her too. During these few days my hope is that Paul is also able to get more rest since nurses will be able to assist Carol, and he can be husband again instead of primary caregiver.

My switch to halftime is working well right now - I come in to the office from 8am-10am, then scoot down to Carols for a few hours while Paul comes to work, then I return to Cornell around 3pm to follow up on anything that came in during the day. Fortunately April is a quiet month here. Also Carols friend Gerard will be off for the summer (he works at Ithaca College) and has offered to help out days.

We think we are much closer to getting a communication device for Carol - a loaner may be here as soon as this afternoon, and the bureaucratic wheels are slowly but surely turning to get funding for her own unit. Her handwriting is nearly illegible now by the end of the day so the availability of the loaner is very good news.

I'm a bit groggy just now - I stayed with Carol last night so Paul could get a nights rest. I still had to get him up at 3am so he could assist with a bathroom visit, but other than that I think he slept well - at least better than many other nights when he is alone and sleeps "with one eye open". Carol also looked rested this morning so I think their trip up to Hospice today should go fairly smoothly.

Sorry for the infrequent updates - bits of time move so slowly now, with the simplest of tasks taking 20-30 minutes to complete, yet the days pass quickly - I'm not sure even Steven Hawking could explain this oddity.

Cheers! Anne :)

March 13

Carol is back out of the hospital, having had a feeding tube installed. Normally, this is an easy operation, but Carol got sick from some of the medication, so she had to spend a few days in the hospital. She's happy to be back out and her spirits are still pretty good.

The conversion of the bottom floor of their house is pretty much complete. The dining room has been converted to a bedroom and the new bathroom is done except for some painting. From a living space perspective, it's not that much worse than what they had when they lived in their 1-bedroom apartment.

February 28

This is probably a little out of date. We'll have an update after the party.

Carol is now completely wheelchair bound. They've ordered an electric wheelchair, but are currently making do with a loaned push model.

The conversion of the bottom floor of their house is progressing. The downstairs bathroom was roughed in over a weekend in January by Paul's brothers. The finish work is still ongoing. The Congregational Church built a ramp so Carol can get in through the back door using the wheelchair.

A support group has been established to help. Many people volunteered. While all the help is much appreciated, the bulk of the caretaking is still falling to Paul and Anne. The general consesus is that it's time to start looking for hospice care.

Carol is still primarily using the whiteboard to communicate. While slow, this does give her the ability to communicate her basic needs and get off the occaisional one-liner. Her spirits are remarkably upbeat, although the strain is clear both on her and those closest to her.

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